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Section 3.2 Exchange – Interoperate
Personal Health Record Technology
This tool describes personal health record (PHR) technology that may be used by your patients or
offered by your organization for your patients’ use. See 3.2 HIE Policy and Procedure for PHR for
suggestions related to incorporating PHR information into your electronic health record (EHR)
Instructions for Use
1. Review the forms of PHRs that are becoming popular, especially among people with chronic
illness and those who must care for an elderly or disabled relative.
2. Understand how PHRs can be valuable aids for your patients and their families and for improving
your ability to collect accurate and complete information.
3. Use PHR resources to obtain more information for yourself and your patients.
Forms of PHRs
Following are the two most common forms of PHRs.
Connected or tethered systems. PHRs that are connected or tethered to a provider or health plan,
such as Medicare or the Veterans Administration (MyHealtheVet). This form of PHR is generally
considered the most accurate because it is constructed in a standard, computerized system with the
sponsor contributing information to it directly. The actual accuracy depends on whether the sponsor
is a provider or payer, and the completeness of information provided. Population of a PHR with
claims-based data is not as accurate or complete—or clearly understood by a patient—as a PHR
populated directly by a provider’s EHR. Even more complete would be a PHR that is populated by
all of a patient’s providers.
The structure of a tethered PHR generally does not permit an individual to alter any information in
the PHR from provider or payer sources. Individuals may add to these records, frequently adding
information on use of over-the-counter medications, their medication schedule and response to
medications, diet, blood sugar readings, etc. This can be very helpful when fed back to the provider’s
EHR or payer’s information systems, enabling care coordination, disease management, and case
management. Individuals who use such a PHR to enter information about new problems they are
having can reduce the data entry burden for providers if that information can be transmitted directly
to the provider’s EHR.
PHRs can also be used to communicate between providers and patients. Some providers use PHR
functionality to conduct “e-visits,” for which some patients are willing to pay directly and some
payers are starting to provide coverage. Individuals may also print out information from their
tethered PHR or provide someone else direct access.
The tethered form of PHR is generally considered to contain protected health information under
HIPAA because it is maintained by a covered entity. If this PHR is supplied through a commercial
PHR supplier, but offered by a provider and essentially maintained by the provider for the individual,
the content is still considered protected health information, even though the relationship between the
provider and commercial supplier may be that of a HIPAA business associate.
Standalone systems. Standalone systems are generally considered to be those offered via the Web
from a commercial vendor. Although an individual may provide access to a provider or payer for the
purpose of helping to populate a Web-based standalone system, more often these systems rely on an
Section 3.2 Exchange – Interoperate – Personal Health Record Technology - 1
individual or family member/caregiver entering information themselves. Such information may be
copies of forms from a provider or payer that are scanned into the system or an abstraction from that
information. Just as in the tethered model, individuals may add their own information as well. Other
formats of standalone PHRs also exist, such as on a flash drive, CD, or smart card; in a computer file
with e-faxed or scanned documents; on Medic-Alert-type jewelry; or in an organized hard copy file of
provider documentation or a paper-based health diary.
Because standalone PHR systems are not under the control of a provider, they may not be as accurate
or complete as the tethered model. They can be made somewhat more accurate by encouraging
individuals to use a PHR system that provides a structured format (such as the Continuity of Care
Document [CCD] structure), promoting content to be supplied by other providers, and by educating
individuals on the role such systems play in their overall health care.
The personal health information standalone PHRs contain is not protected health information under
HIPAA, and the supplier of the PHR is not a HIPAA covered entity, or even a business associate of a
covered entity. While this lack of HIPAA status may mean more to the individual than to a provider
from the standpoint of privacy and security protection, providers are also concerned about the
accuracy of information in such PHRs for the patient’s well-being and their own liability concerns.
The recent HITECH legislation acknowledges privacy and security concerns in vended-PHR
products and requires reporting of any breaches from them to be made to the Federal Trade
Commission as well as to the individual. The FTC is responsible for protecting against unfair and
deceptive trade practices, which may arise when a breach occurs from a PHR in violation of the
privacy policy and security assurances posted on their Web site.
PHR Resources
The following resources may be helpful to understand more about PHRs for your organization:
Health Level Seven (HL7) is the predominant standards development organization defining
transport protocols for use within health information systems. It has developed a PHR-System
Functional Model ( HL7 also supplies the Clinical Document Architecture (CDA)
format standard that, together with ASTM’s Continuity of Care Record (CCR) content standard,
forms the Continuity of Care Document (CCD) standard.
ASTM International ( provides the E236905 Standard Specification for Continuity of Care Record (CCR) and an implementation guide for
using the CCR XML schema for generation of a standards-compliant CCR.
Connecting for Health provides a framework for PHR structures at
National Committee on Vital and Health Statistics provides a report and recommendations on
use of PHRs and PHR Systems (
The following resources may be helpful for your patients to review concerning availability of PHRs:
myPHR is a Web site devoted to informing the general public about PHRs, how to start a PHR,
and health information access rights, as well as provides free PHR forms, PHR tools and
services, links, and a free presentation on PHRs. (
Department of Veterans Affairs provides access to a PHR set up by the Department for
veterans, enabling them secure access to request prescription refills, access their military health
history, and obtain emergency contact information, names of providers and physicians treating
veterans, and information from a medical library. (
Section 3.2 Exchange – Interoperate – Personal Health Record Technology - 2
Centers for Medicare and Medicaid Services provides
( for its beneficiaries to have access to personalized information
regarding benefits and services.
Copyright © 2009, Margret\A Consulting, LLC. Used with permission of author.
For support using the toolkit
Stratis Health  Health Information Technology Services
952-854-3306  [email protected]
Section 3.2 Exchange – Interoperate – Personal Health Record Technology - 3